Why Are So Many Women Getting Double Mastectomies They Might Not Need?
Last December Kathy Bressler got the news so many of us fear: A biopsy revealed that a suspicious mass in her right breast was in fact cancer. Her surgeon told her she was a good candidate for lumpectomy because the tumor was smaller than 2 centimeters—they could remove it and preserve both her breasts. But Bressler’s mother and grandmother had died of breast cancer, so instead she told her surgeon she wanted a double mastectomy.
“My mom had a single mastectomy the first time she was diagnosed, in her 30s—then a second mastectomy when they found cancer in her other breast 20 years later. And in between she had umpteen mammograms and constant worry,” says Bressler, a 56-year-old hospital administrator in Tacoma, Wash. “I didn’t want to go through that. I wanted to take them both off and be done with it.”
Even a decade ago, treating cancer in one breast by removing both—known as a contralateral prophylactic mastectomy (“contralateral” meaning opposite side, and “prophylactic” meaning preventive)—would have sounded like a radical choice. But these days, CPM is becoming increasingly common—a trend that worries some doctors because, in most cases, there’s no compelling medical reason to get rid of the healthy breast. “More newly diagnosed women are coming to the clinic, and instead of asking, ‘What are my treatment options?, they’re saying, ‘I want both breasts removed,’” says Michael Sabel, MD, chief of surgical oncology at the University of Michigan. “That’s not necessarily the wrong choice, but we want to make sure patients are doing it for the right reasons—and know what they’re getting into.”
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What’s driving the surge
The numbers are eye-opening: In a study published earlier this year, researchers at Brigham and Women’s Hospital found that the proportion of women diagnosed with stage 1 to stage 3 cancer in one breast who decided to have CPM more than tripled between 2002 and 2012, from less than 4 percent to nearly 13 percent. “I wasn’t surprised, because I see it every day in my practice—but it is somewhat concerning,” says senior study author Mehra Golshan, MD, chair of surgical oncology at Brigham and Women’s. “Double mastectomy isn’t without risks, especially when you have reconstruction, too—which the majority of women choose to do. And it doesn’t increase your chance of surviving the cancer, because breast cancer is unlikely to spread to the other breast.” In other words, if your goal is to beat the cancer you have, removing a healthy breast will most likely give you little, if any, survival advantage. So why are so many women doing it?
Worry tops the list. When Christine Hunt, 48, of Brooklyn, Conn., was diagnosed with stage 1, chemo-resistant breast cancer in 2014, the same year her mom was diagnosed for a second time, she knew she wanted a double mastectomy. Like Kathy Bressler’s mother, Hunt’s mom had gotten a single mastectomy and then developed cancer in her other breast decades later. “I didn’t want to have to constantly worry when or if the other shoe was going to drop,” says Hunt.
It’s natural for women who are diagnosed with breast cancer to feel anxious about cancerous cells cropping up in their other breast—and it can happen, says Todd Tuttle, MD, chief of surgical oncology at the University of Minnesota Medical School. “But fear can cause you to grossly overestimate the risk,” he says. In a survey Dr. Tuttle and his colleagues conducted several years ago, they found that women who had cancer in one breast thought their odds of developing a potentially deadly tumor in the other were over 30 percent—“far higher than the actual risk of 4 to 5 percent,” he says.
Doctors may be inadvertently fueling women’s anxiety by ordering more MRIs of both breasts for those who are newly diagnosed, adds Dr. Sabel. Because MRIs provide more sensitive images of the breast tissue than mammograms, they’re more likely to find suspicious-looking—but ultimately harmless—abnormalities in the cancer-free breast. “That may scare some women into thinking that they should have the healthy breast removed just in case,” says Dr. Sabel.
But even if you understand the low likelihood of developing cancer in the other breast, it can still be difficult to quell your fear—fear that spikes every time you have a mammogram or feel something unusual in your breast, notes Shoshana Rosenberg, ScD, an epidemiologist at the Dana- Farber Cancer Institute in Boston. Over the course of a decade, Nicole Witt, 47, of Brandon, Fla., endured seven biopsies for suspicious mammography findings before finally having a double mastectomy in 2013. “My sister was diagnosed with breast cancer in her 30s, so I started getting mammograms really early,” she says. “I had so many biopsies, I felt like I was having a mastectomy piece by piece. It was incredibly stressful. When my last biopsy revealed cells that weren’t cancerous but weren’t 100 percent normal, either, my doctor and I agreed I should have a double mastectomy. It’s been such a relief to put that issue behind me.”
The younger you are, the more time you have to potentially develop a second cancer—and that can make anxiety a potent consideration for women in their 20s and 30s, says Rosenberg. “You can tell a young woman that the risk of contralateral breast cancer is low, but her risk of getting cancer in the first place was low—so reassurances only go so far. And if women have young children, often the first thing they think of is wanting to be around to watch their kids grow up,” she says. “If you don’t think you can bear the stress and worry of having mammograms every six months, a prophylactic mastectomy might be the right choice. That said, surgery probably isn’t the best remedy for anxiety.”
Yet it’s not just anxiety driving the trend; there’s also been a subtle attitudinal shift in favor of double mastectomy that may be encouraging more women these days to go for the more extreme treatment. “As medical historians have pointed out, 50 years ago doctors were more inclined to recommend that women have radical mastectomies, so women felt that taking charge of their health meant saving their breasts by having a lumpectomy with radiation,” says Karen Hurley, PhD, a clinical psychologist in New York City who specializes in hereditary cancer risk. Today, in part because of news coverage of genetic mutations, women tend to see double mastectomy as the empowered choice, says Hurley: “There’s not a lot of talk about the bravery of women who choose to keep their breasts and maintain their screening regimens.”
That change in attitude stems partly from the media’s coverage of celebrities with breast cancer, says Dr. Sabel. He and his colleagues recently analyzed news reports from 2000 to 2012—years when the rate of CPM climbed ever higher—and found that, when a star had a bilateral (double) mastectomy, her treatment was the focus of the story, the coverage tended to be positive, and the risks and benefits of the choice weren’t clarified. “In articles about celebrities who had unilateral mastectomies or lumpectomies, their treatment often wasn’t even mentioned,” says Dr. Sabel. “Celebrities can impact trends, even when it comes to major health decisions.”
But one important fact often isn’t clear in media coverage: Some celebrities who have had a double mastectomy actually carry a genetic mutation that puts them at extraordinarily high risk of breast cancer. For the estimated 250,000 to 415,000 women in the U.S. with a mutation in their BRCA1 or BRCA2 gene—including Angelina Jolie, who grabbed headlines
in 2013 when she had a prophylactic double mastectomy—the surgery can reduce their odds of developing the disease by more than 90 percent. The National Comprehensive Cancer Network (NCCN), the organization that creates evidence-based clinical practice guidelines, has deemed prophylactic double mastectomy a viable option for women with genetic mutations.
However, the NCCN recommends against CPM for women who are diagnosed with breast cancer in one breast and don’t carry a high-risk mutation. Most breast surgeons agree with that advice. A recent survey of 601 breast surgeons revealed that, while 95 percent were comfortable performing CPM on women with BRCA mutations, just 34 percent were comfortable doing the surgery on women of average risk. In July, the American Society of Breast Surgeons issued a statement that CPM should be discouraged for average-risk women with cancer in one breast.
“I always mention contralateral mastectomy as an option—but if the patient isn’t likely to benefit, I explain why I wouldn’t advocate for that approach,” says Dr. Sabel. “But most patients who opt for it have already decided that’s the route they want to take before they talk to a surgeon, even though the majority of them don’t have any known mutations that put them at increased risk of breast cancer.”
Two other factors probably play a role in women’s decisions to have CPM: First, the surgery is covered by insurance. “I believe it should be covered, but women would undoubtedly feel different about it if it weren’t,” says Shelley Hwang, MD, chief of breast surgery at Duke University. Second, mastectomy and reconstruction techniques have improved—and it’s easier to create symmetrical breasts if you do both sides at the same time, says Deanna Attai, MD, a breast surgeon and assistant clinical professor of surgery at the David Geffen School of Medicine at the University of California, Los Angeles. “Many women are interested in a more natural breast appearance, minimal scarring and symmetry,” says Dr. Attai.
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The risks and the rewards
When Jennifer Bolstad, a 40-year-old landscape architect in Brooklyn, N.Y., first learned she had cancer in her right breast, eight years ago, she thought she’d have a mastectomy on that side only. “My husband and I were going to start trying to have children, and I really wanted to breast-feed,” she says. But when her doctor told her that the type of tumor she had—invasive lobular carcinoma—slightly increased her risk of developing cancer in the unaffected breast, she decided to have a double mastectomy and sacrifice her ability to breast-feed.
“I don’t have any known genetic mutation, but I’ve watched two aunts get diagnosed with the disease and one die in her 30s. I didn’t want to live in fear for the rest of my life,” she says. “Still, when I was pregnant with my son a few years later, I really mourned the loss of my breasts, and there have been consequences I didn’t expect, like the fact that I have no sensation in my breasts”—a common side effect of mastectomy and reconstruction.
Most women who get CPM don’t regret their decision, but studies show that many wish they had known more about the trade-offs before embarking on the procedure, says Dr. Hwang. It’s important to understand, for instance, that women who undergo CPM don’t have a higher quality of life, on average, than those who choose less invasive treatment options—and they may even have lower levels of physical well-being, according to a study by Dr. Hwang, because the surgery itself has side effects that can cause long-lasting problems. For instance, up to one-third of women have chronic pain after mastectomy with reconstruction, says Dr. Hwang. “You can get infections, too, and nonhealing wounds,” she adds. “Those factors might not change your mind, but you should be aware of them before you commit to the surgery.”
Having a clear grasp of the risks and benefits is especially critical for BRCA-negative women diagnosed with ductal carcinoma in situ (also known as stage 0 cancer), precancerous abnormal cells in the milk ducts—31 percent of whom are choosing CPM, per a recent study, even though low-risk DCIS can often be safely treated by doing nothing but getting regular mammograms to make sure the condition hasn’t progressed, says Dr. Hwang. “Mastectomy is a big price to pay for a disease that’s unlikely to kill you,” she notes.
Kathy Bressler says the fact that a double mastectomy was far more invasive than a lumpectomy didn’t worry her beforehand, but it ended up being a bigger surgery than she had anticipated. Immediately afterward, the skin on one of her breasts started dying; to save it, she had to lie for hours in a hyperbaric chamber filled with 100 percent oxygen every day for five weeks. “Because the surgeon cuts your muscles to make room for the tissue expanders, which they put in prior to implants as part of the reconstruction, you have T. rex arms at first,” she adds, “and my pain was extreme for the first two weeks.” Mastectomy with reconstruction can require multiple, hours- long surgeries (each with weeks of recovery) spanning many months.
In contrast, lumpectomy is a comparatively simple operation. “We make a small incision, it carries low risk, and most women have an excellent cosmetic result,” says Dr. Sabel. (However, most patients still require radiation.)
But Bressler has no regrets. Her postsurgical pathology report revealed three more tumors in her right breast. Her cancer also turned out to be triple-negative, a particularly aggressive subtype. “My mammogram had been clean, and an ultrasound showed only the first tumor,” she says. “So I don’t look at lumpectomy wishfully. I think the fear of another bout would have always been there—and now I just don’t have that.”
Yet even going with the double mastectomy doesn’t eliminate all the risk. When Jennifer Bolstad was pregnant, she developed stage 0 lobular carcinoma in situ in the small amount of breast tissue that she had remaining on the “healthy” side. “I’m not sure we would have found it as early as we did if I’d still had my natural breast, so I took that as a sign that I’d made the right choice in having a double mastectomy,” she says. “But there are no guarantees with any treatment. You have to think about what choice will be easiest to live with and deal with the consequences as they come up.”
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9 questions to ask your surgeon
Hearing you have breast cancer can be overwhelming. So plan on bringing someone with you to your appointment to help you take notes. It also helps to jot down questions ahead of time. Here are some key ones to ask.
1. What are my surgery choices?
2. Which do you recommend, and why?
3. Will it increase my chance of survival?
4. What are the odds that the cancer will come back after treatment—and what would my options be if it does?
5. Will the surgery affect my ability to breast-feed?
6. What are the risks and side effects of the surgery?
7. What is the recovery time?
8. What will my breasts look and feel like afterward?
9. Will my breasts have sensation?